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I live in a Chronic Fatigue Syndrome ghetto. Everyone in the world who has CFS lives there with me.
We're better off now with the internet, with blogs and personal websites, with Facebook. Some of us can't walk from one room to another but we can type.
Sometimes even typing can make us crash but we're linked with each other now. And after the terrible isolation we've experienced we're not about to let go.
Recently the CFS ghetto has experienced some explosions. You possibly haven't heard because mainstream news media doesn't report on us much. But we chronics are sending each other articles, blog posts and video links like crazy.
I thought it would be nice if you got to read this stuff.
Last month, the American Association of Blood Banks advised people with CFS not to donate blood. It made sense, though it comes a bit late in the game. I'd decided years ago not to donate, since I'd gotten CFS.
The recent concern stems from research last fall linking a retrovirus, XMRV, with Chronic Fatigue Syndrome.
What if XMRV causes CFS? What if it's transmitted by blood?
Australia, Canada and New Zealand bar people with CFS from donating blood. Yet the U.S. doesn't.
Why not?
Then I heard the U.S. Food and Drug Administration and National Institutes of Health joined forces researching the possible link between XMRV and CFS.
The FDA and NIH? This was thrilling to me.
Word was leaked that they found XMRV in the blood of CFS subjects and healthy controls. Thrilling again. But then their research was held back from publication.
Meantime the Centers for Disease Control and Prevention published their own research, finding absolutely no XMRV in anybody's blood.
The CDC didn't use the same methods, the same CFS definition, or the same equipment to collect and keep blood samples, so their results were bound to be different from the FDA-NIH's.
All this leaves me with more questions than answers.
Other countries are protecting their people from XMRV and possible danger. Why not the U.S?
Why was the FDA-NIH research not published? Was it because their results differed from the CDC's?
But research papers contradicting each other are published all the time. What's different about CFS and XMRV?
That's been the question here in the CFS ghetto for years.
What is it about CFS that it's still not treated like a real disease?
Resources
Chronic Fatigue Sufferers May Be Asked to Avoid Donating Blood
http://blogs.wsj.com/health/2010/06/14/chronic-fatigue-sufferers-may-be-asked-to-avoid-donating-blood
Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?
http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection
A.M. Vitals: Confusion Over XMRV-Chronic Fatigue Syndrome Continues
http://blogs.wsj.com/health/2010/06/30/am-vitals-confusion-over-xmrv-chronic-fatigue-syndrome-continues
CDC Team's XMRV-Chronic Fatigue Syndrome Paper Is Out
http://blogs.wsj.com/health/2010/07/01/cdc-teams-xmrv-chronic-fatigue-syndrome-paper-is-out
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca
http://ncubator.ca/blogger
Add a Comment6 Comments
Hi Zarla,
I'm glad to know something I said helped. The more we stay connected with each other, the more difference we can make for each other, eh?
I don't know why they'd want to hold back research from the public either. The only kinds of answers to that question that I can imagine seem paranoid. But let's face it, they're not making it easy, when it looks like they are withholding things from us.
I hope your health improves and one day you will walk right out of this illness.
July 18, 2010 - 5:29amThis Comment
Hi Jody,
It's been a long time since I commented on a blog of yours, you gave me some great advice back then which I tried, and continue to live by, thank you! It is truly great to be able to speak to you again.
I have been severely jaded by the whole XMRV debate, there's a local group who are very agressive about the whole thing and so I've done an 'ostrich' and buried my head!
I read your post cos I knew you'd make sense!
Yes, we don't know anything for certain with XMRV, we just know that it's a nugget of hope that has been panned outta the depths, but is now being hidden from those whose lives it could possibly change.
This is so totally confusing, why wouldn't you go public on something this exciting? This something could be HUGE business and a fantastic moneymaker, so what gives?
I hope you continue to improve Jody, whatever causes our illnesses we all deserve to find treatment that makes us feel better.
Take care,
July 18, 2010 - 12:31amZarla
This Comment
Thanks for the article Jody.
Sometimes it feels more like the gutter than a ghetto. The gutter is the place where rubbish collects ready to be flushed away into a sewer out of sight and that IMO, is the whole purpose of the CDC study, Its an attempt to discredit all previous research proving the existence of XMRV and get it flushed away out of sight.
But as we all know, sewers start to stink after and this whole episode with the CDC study is beginning to smell to high heaven.
Different test tubes,people recruited as test subjects by phone who have never even been diagnosed with ME/CFS and some working a 48 hour week, disregard for the standard Canadian profile for CFS symptoms, and last but not least, data supplied by a previous head of the CDC who has always stated "XMRV doesnt exist".
Your right Jody, both the CDC and the NIH/FDA papers should have been published at the same time and evaluated by peer review.
Now will somebody in the US government please sort this mess out and give the long suffering CFS patients hope at last that their condition will stop being regarded as a psychiatric problem.!
July 13, 2010 - 8:13amLiverock
This Comment
Liverock,
I completely understand where you're coming from.
Thanks for your comments.
July 13, 2010 - 10:04amThis Comment
"Three years ago, I found treatment that worked for me, and now I am making a comeback. "
What treatment worked for you? And how on earth could it cure a retrovirus?
July 13, 2010 - 7:31amThis Comment
My articles about CFS here on empowHER and on my website www.ncubator.ca talk quite a bit about the things that have brought improvement for me.
As to how it could cure a retrovirus? Who knows if it has? Who knows if I have XMRV? Who knows whether it is linked to the symptoms of CFS?
This is part of the reason we need research to be done. And when it's been done it needs to be published.
For all I know I don't have XMRV. I may be a case of too many toxins, and food sensitivities. When a test for XMRV is available and affordable in my area, I will be able to find out.
One of the areas that the lack of research makes itself felt.
Who knows whether or not XMRV is a cause for CFS? That is what my article was about. We don't know. We need to find out. And till we find out the blood supply should not be at risk in case XMRV does cause CFS or other diseases, like prostate cancer.
Then again, maybe I do have XMRV. And maybe I'm not getting "cured". Maybe I'm in a form of remission, and will get flattened again when the retrovirus decides to give me another shakeup.
Once again -- I don't know. And the reason I don't know is because next to no research is done for this disease. And now that some has been done, the brakes have been put on its publication.
All I can really know for sure is this. I had some really bizarre and limiting symptoms for many years. And things were getting worse. I started seeing a naturopath who has been treating me for these last 3 years and within a few months of my first visit with her, I began to slowly improve.
I am worlds healthier and more functional than I've been in some years. Things seem to be continuing to point that direction. I hope I continue to heal.
That's really all I know for sure. Some research on CFS would go a long way to knowing more.
July 13, 2010 - 10:01amThis Comment